Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

Transforming the diagnosis of complex diseases: A #MayMomentum Research update!

#MayMomentum research news!

Transforming the diagnosis of chronic complex diseases:

An update on the PASS/CAT project

You might remember last year OMF announced that we are working on an exciting new project to streamline the arduous diagnostic process for people living with chronic complex diseases.

The “Personalized Automated Symptom Summary – Computer Adaptive Test” (PASS/CAT) is a machine learning tool that will help patients more accurately and efficiently convey their symptoms to their treating physician.

We are excited to share the insights of one of our partners in this project, Dr. Mary Slavin, a national expert in metrics, who is working alongside Dr. Ronald Tompkins and Dr. Kazis at the OMF funded Harvard ME/CFS Collaboration and Linda Tannenbaum at Open Medicine Foundation (for patient engagement):

The Inspiration

Dr. Mary Slavin

People with complex chronic diseases often experience symptoms for years prior to receiving a diagnosis. They are often misdiagnosed, or physicians suggest that the symptoms they experience are psychological in nature and not due to an underlying illness.

Current assessments have several significant limitations. The assessments are not based on a sound foundation and most do not focus on hallmark symptoms experienced by persons with complex chronic conditions.

The concept for the PASS/CAT emerged from Dr. Tompkins’ vision to develop a new assessment tool that would provide greater efficiencies for the primary care physician in a highly time-sensitive environment. 

The PASS/CAT combines a person-centered approach with artificial intelligence and machine learning to assess the wide range of symptoms experienced by people with chronic complex diseases such as ME/CFS, Fibromyalgia and Post Treatment Lyme Disease Syndrome. When developing the PASS/CAT, we aim to overcome several limitations associated with the current diagnostic process by:

  • Reviewing current assessments to identify items that could be included in the PASS/CAT
  • Conducting interviews and focus group sessions with people living with complex chronic conditions to develop an “item bank” that captures their experiences 
  • Administering a questionnaire to a large national sample of subjects with complex chronic conditions who range in symptoms and severity
  • Using this data to develop complex computer-based algorithms that customize and target diagnostic questions to each person using the tool
  • Developing reports that present an individual’s symptom profile and quantifies disease severity with recommendations for the patient

Person-Centered Approach

We conducted extensive interviews with people with chronic complex diseases. The research team analyzed the transcripts of the interviews and identified key themes, and we are using these analyses to develop new assessment items. These items will describe the patient’s experience of symptoms using terms that emerge from their interviews and focus group sessions.

Ultimately, interviews validated the frustration that people with complex chronic diseases experience due to a lack of understanding about them and the inability to obtain a diagnosis:

“…Unfortunately, doctors don’t trust what you’re saying. And then the other thing is, when you have an illness that affects your cognitive functioning, it makes it even harder for you to try to explain what’s going on.”

– Quote taken during patient interviews 

What is the vision for how the PASS/CAT will be used by patients and doctors? 

Since the assessment is computer-based, the physician can send a link to the patient for completion prior to their visit. The PASS/CAT physician report will quantify the level of the patient’s symptoms and summarize it in a symptom profile. Alternatively, a person with symptoms of chronic, complex diseases like ME/CFS will be able to go to Open Medicine Foundation’s website, complete the assessment and bring the report to their physician to review and discuss the results as a clinical test.

Read more about the PASS CAT project here.

Please join OMF on our journey to transform the diagnosis and treatment of ME/CFS, Post-Treatment Lyme Disease, and Fibromyalgia by giving during our #MayMomentum campaign today! By donating, you help ensure that we have the resources necessary to fulfill this project’s promise — along with many others — to advance and improve the clinical care of people with chronic, complex diseases.

Prefer donating on Facebook? Visit our May Momentum Facebook fundraiser! 

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

 

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo